My Story, Part III: Finding a Diagnosis, Finding a Treatment
We’re finally honing in on the end of this long-winded introduction, folks! In my last post, I described how a seemingly benign course of antibiotics for a urinary tract infection threw my body into complete and total chaos almost overnight, culminating in a move back to the U.S. to try to figure out why I was quickly descending into severe and confusing illness. As you might imagine, someone who’s quickly becoming bedridden and housebound is likely to spend quite a bit of time on the internet, and I was no exception. As symptoms such as intense fatigue, all-over body itching and burning, joint pain, and “brain fog”—a condition often referenced in the Lyme world that refers to a set of neurological symptoms such as haziness, forgetfulness, and trouble focusing—set in in earnest, I continued to try to research my way out of the ever-deeper hole in which I found myself.
As I looked up this set of symptoms online, Lyme disease kept popping up as a possible explanation. Formerly (blissfully) ignorant to the existence of “chronic” Lyme, this hypothesis didn’t originally make sense to me: After all, as I recounted in the first blog post of this series, I had most probably contracted an acute case of Lyme the summer prior, and had treated it with an extensive course of antibiotics that had made me feel much better. But the more I read about chronic Lyme—cases of the infection that aren’t cured by conventional treatments, and instead linger in patients for many years—the more I realized I was (potentially) an almost cookie-cutter case.
According to a 2017 study published in the journal Frontiers in Medicine, an estimated 10-20% of those who contract Lyme disease and treat it with the typically-prescribed two-to-three-week course of antibiotics do not get well, and continue to experience symptoms including fatigue, pain, sleep disturbances, depression, and anxiety. As I dove headlong into researching this topic, I began to suspect that those numbers might actually be much higher. Across social media pages and in online discussion forums, legions of Lyme sufferers spoke of the years and years of therapies they had tried—from allopathic medications to herbal tinctures to magnet therapy to hypnosis—which mostly hadn’t made a dent in their day-to-day symptoms. A few talked about “managing” their Lyme disease with intensive diet and detoxification protocols, and even fewer spoke of attaining “remission,” a seemingly perilous state of equilibrium in which they felt healed, but were forever in danger of “relapsing” due to illness, injury, stress, or some other immune-disrupting event.
Though I had not previously considered the possibility that the Lyme I had dealt with had not been cured, I saw myself—and my symptoms—in so many of these accounts. Like these people, my days were becoming a dark and unchanging haze of tiredness and pain by day, and, paradoxically, severe insomnia by night. When I read that medications affecting the immune system could tip a remission case into relapse, I thought back to those antibiotics I had taken in Mexico some months before. Slowly, a hypothesis—and a possible course of action—began to form in my (now-hazy) mind.
Naturally, the first possibility I looked into was testing. If I was supposedly still suffering from Lyme disease, some kind of blood test would be able to demonstrate that, right? Unfortunately, as I mentioned in my first blog post, tests for Lyme are notoriously inaccurate, spitting false negatives in up to 50% of cases. As I would later learn, this is most likely because Lyme bacteria don’t tend to hang out in the blood: Instead, they camouflage themselves throughout the body (and brain) in two protected forms, referred to as cysts and biofilms. Possibly one of the many reasons Lyme is so resistant to treatment, these presentations of Borrelia bacteria are also likely to evade the blood tests designed to detect them.
As I researched, I learned that a few companies around the world manufacture what are supposedly ultra-sensitive tests for Lyme: Germany’s Armin Labs, and California’s IGeneX. Quite predictably derided by Western medicine practitioners as being fraudulent tests whose makers simply wish to take money from desperate sick people, I spoke with many Lyme sufferers who swore that after many years of playing guessing games with their health, these tests were finally able to diagnose their “mystery” illnesses as Lyme.
In order to even obtain an IGeneX testing kit—which I would have to pay more than a thousand dollars for out-of-pocket, by the way—I first had to see what’s called a “Lyme-literate physician.” I was able to find one in the Hudson Valley of New York State—an area notorious for ticks and Lyme disease—and in early December of 2018, after more than a year of intense sickness and fruitless investigations into its cause, braved the two-hour bus ride up north from Manhattan.
When I related my entire history to the practitioner, she agreed that my timeline and symptoms appeared to indicate Lyme disease. She printed me off the paperwork for the blood test, and I trekked back home on an evening bus as dusk set in and the air took on an early-winter chill.
At this stage of my illness, I was rapidly becoming almost nonfunctional. My primary challenge was a chronic, unrelenting fatigue; at around this time, I remember, I took a walk around the block with my two roommates, as I had been pent up at home in bed or on the couch for several days. The exertion from the walk of a few blocks exhausted me, and when we returned home in the early afternoon, I crawled onto the couch and slept for nearly six hours.
So as you might imagine, this solo adventure upstate and back quite nearly bankrupted my energy reserves. Back home the next day or the one following it, I located a nearby laboratory which could draw my blood according to the IGeneX kit’s instructions. Located about 10 blocks away, in a different era I would have zipped over on my bike, but I remember being so bone-tired the day I went to get my blood drawn that I took a cab there, and back.
I had been told by the Lyme-literate doctor that the turnaround time for the blood test—swamped, as the California laboratory typically was, by a steady stream of blood samples—would be a couple of weeks. As everything I had so far read strongly suggested that I would receive a positive test result, I decided to use the time to really look into how this seemingly impossible-to-treat illness could be addressed. To this day, I don’t remember how I found the page, but one evening, scrolling Instagram, I somehow landed at the profile of a woman named Brooke Geahan.
A blonde, attractive woman featured hiking, baking, and sipping natural wines in the majority of the little squares populating her grid, Geahan’s page nevertheless hinted at a darker past. Interspersed with these sunny images were more dramatic ones of her looking bedraggled and desperate: in a hospital, a tube of oxygen up her nose; at home, injecting intravenous fluids into a port in her chest. As I scanned the woman’s posts, I read her story. She had become very ill with Lyme and additional coinfections conferred by a tick bite. She had nearly died. Eventually, she discovered something called bee venom therapy (BVT). She was now fully healed, and spreading the word about the treatment.
Although prior to my illness I had occasionally partaken in Western medicine—such as all those antibiotic prescriptions I previously described—my brief time immersed in the Lyme world had already informed me that conventional medicine offered nothing to Lyme sufferers. Its only recommendations were for antibiotic treatment, and I already knew that I would never again swallow those pills after what had happened to me after my last go-around with them. I had read a little bit about comprehensive herbal protocols developed by healers such as Stephen Buhner, but these often-expensive treatments seemed only to help people manage their symptoms, as opposed to curing them. And so when I read Geahan’s story—and that of a handful of others who claimed to have healed completely on bee venom—I knew almost instantly that it would be the course to take if I did, in fact, have Lyme.
On January 2, 2019, a week before my 33rd birthday, I received this breezily worded email from my Lyme practitioner: “Igenex just came in! Positive Lyme and bartonella [a common co-infection transmitted along with Borrelia].” By then, I had already spent many hours reading absolutely everything I could find about BVT: as I had learned, the practice of stinging oneself with live bees in order to benefit from their healing venom was an age-old one, traditionally used to treat systemic ills such as rheumatoid arthritis and multiple sclerosis. In more recent years, it had been discovered (or re-discovered) by Lyme sufferers, and those who chose to sting were pretty much the only people I found who had really and truly overcome their symptoms to go on to lead active and healthy lives.
As I gathered from my research online in Facebook communities such as Healing Lyme with Bee Venom, bee venom seems uniquely equipped to treat Lyme disease for a variety of reasons. Composed of more than 60 identifiable components, over 18 of which exhibit anti-inflammatory and pain-relieving properties, bee venom’s most powerful weapon is melittin, a highly antibacterial substance that, when applied to the various Borrelia forms in vitro, has been shown to physically break apart the bacteria.
The protocol goes like this: Those treating with BVT either gather live honeybees from flowers or obtain them from a local beekeeper; within the U.S., bees can also be ordered by mail. Then, three times a week—in an effort to keep on top of the quickly-dividing Borrelia bacteria—“stingers” use special extended tweezers to grab each bee, then sting themselves, or have a friend, partner, or family member sting them, along the length of their spine. The theory is that the spinal nerves are able to carry the venom to the different parts of the body to which they correspond, annihilating the Lyme bacteria in its active form as well as breaking open the cysts and biofilms.
Test results in hand—well, in inbox at least—I went to work gathering all the supplies I would need, and started to prepare myself mentally and emotionally for a years-long journey with the bees.
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